title: Agreement of self-reported hormone receptor status with cancer registry data in young breast cancer patients.
abstract: BACKGROUND
  Though breast cancer subtype is a key determinant of treatment choice and prognosis, few studies have assessed breast cancer patients' knowledge of estrogen and progesterone receptor (ER/PR) status.
  
  
  METHODS
  Women diagnosed with invasive breast cancer at age 18-64 years in 2007 were recruited from the Pennsylvania Cancer Registry, and mailed a questionnaire that asked respondents to identify their ER/PR status. There were 2191 respondents included in the analysis. Agreement between self-report and cancer registry ER/PR status was assessed using kappa statistic. Logistic regression was used to assess the association of demographic, socioeconomic, and tumor factors with inaccurate self-report of ER/PR status.
  
  
  RESULTS
  Fifty-nine percent of respondents reported ER/PR positive status, 15% reported ER/PR negative status, 17% responded 'don't know', and 9% did not respond. Overall, there was 69% agreement between self-report and cancer registry data, and fair agreement as measured by kappa (0.36). After excluding women who did not know or did not report their ER/PR status, there was 93% agreement, and substantial agreement as measured by kappa (0.76). Women who were older, non-white, less educated, lower income, and had ER/PR negative disease were significantly more likely to inaccurately report their ER/PR status.
  
  
  CONCLUSIONS
  Though a significant proportion of women do not know their hormone receptor status, women who reported their ER/PR status were accurate. Our results suggest room for improvement in patient knowledge of tumor subtypes, but also that self-reported ER/PR status may be a useful surrogate when medical record or cancer registry data is unavailable.
authors.affiliation: University of Pennsylvania Perelman School of Medicine, Philadelphia, PA, United States. annemcc@mail.med.upenn.edu
authors.forename: Anne Marie
authors.initials: AM
authors.lastname: McCarthy
authors.forename: Erin
authors.initials: E
authors.lastname: McGuire
authors.forename: Mirar
authors.initials: M
authors.lastname: Bristol
authors.forename: Tracey
authors.initials: T
authors.lastname: Fredricks
authors.forename: Susan M
authors.initials: SM
authors.lastname: Domchek
authors.forename: Katrina
authors.initials: K
authors.lastname: Armstrong
mesh_terms: D000328:Adult; D001943:Breast Neoplasms / Q000175:diagnosis* / Q000453:epidemiology / Q000378:metabolism / Q000473:pathology; D004522:Educational Status; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008875:Middle Aged; D009361:Neoplasm Invasiveness; D009367:Neoplasm Staging; D011960:Receptors, Estrogen / Q000378:metabolism*; D011980:Receptors, Progesterone / Q000378:metabolism*; D012042:Registries; D057566:Self Report
chemical_list: D011960:Receptors, Estrogen; D011980:Receptors, Progesterone
keywords: Agreement; Breast cancer; Cancer registry; ER; Estrogen receptor; PCR; PR; Pennsylvania Cancer Registry; Progesterone receptor; Self-report; Tumor subtype; estrogen receptor; progesterone receptor